On this page you will find a variety of resources to do with the history of neurodegenerative disorders, conditions where nerve cells in the brain or nervous system lose function over time and ultimately die.
An article that reviews some early central characters in the field of dementia and maps the evolution of the concept of dementia before Alzheimer. It also discusses important technical advances and describes the three types of dementias: acute, chronic, and senile. François Boller, History of Dementia, in Handbook of Clinical Neurology, Volume 89, 2008, Pages 3-13
Article by Hanns Hippius and Gabriele Neundörfer in Dialogues in Clinical Neuroscience. 2003 Mar; 5(1): 101–108. outlining the history of the discovery of Alzheimers.
A website which lists some important milestones including the founding of the Alzheimer's Association in 1980, which has played a key role in advancing research and raising awareness of the disease.
Mind thief : the story of Alzheimer's by Han YuAlzheimer's disease, a haunting and harrowing ailment, is one of the world's most common causes of death. Alzheimer's lingers for years, with patients' outward appearance unaffected while their cognitive functions fade away. Patients lose the ability to work and live independently, to remember and recognize. There is still no proven way to treat Alzheimer's because its causes remain unknown. Mind Thief is a comprehensive and engaging history of Alzheimer's that demystifies efforts to understand the disease. Beginning with the discovery of "presenile dementia" in the early twentieth century, Han Yu examines over a century of research and controversy. She presents the leading hypotheses for what causes Alzheimer's; discusses each hypothesis's tangled origins, merits, and gaps; and details their successes and failures. Yu synthesizes a vast amount of medical literature, historical studies, and media interviews, telling the gripping stories of researchers' struggles while situating science in its historical, social, and cultural contexts. Her chronicling of the trajectory of Alzheimer's research deftly balances rich scientific detail with attention to the wider implications. In narrating the attempts to find a treatment, Yu also offers a critical account of research and drug development and a consideration of the philosophy of aging. Wide-ranging and accessible, Mind Thief is an important book for all readers interested in the challenge of Alzheimer's.
Self, senility, and Alzheimer's disease in modern America : a history by Jesse F. BallengerHistorian Jesse F. Ballenger traces the emergence of senility as a cultural category from the late nineteenth century to the 1980s, a period in which Alzheimer's disease became increasingly associated with the terrifying prospect of losing one's self. Changes in American society and culture have complicated the notion of selfhood, Ballenger finds. No longer an ascribed status, selfhood must be carefully and willfully constructed. Thus, losing one's ability to sustain a coherent self-narrative is considered one of life's most dreadful losses. As Ballenger writes "senility haunts the landscape of the self-made man." Stereotypes of senility and Alzheimer's disease are related to anxiety about the coherence, stability, and agency of the self--stereotypes that are transforming perceptions of old age in modern America. Drawing on scientific, clinical, policy, and popular discourses on aging and dementia, Ballenger explores early twentieth-century concepts of aging and the emergence of gerontology to understand and distinguish normal aging from disease. In addition, he examines American psychiatry's approaches to the treatment of senility and scientific attempts to understand the brain pathology of dementia. Ballenger's work contributes to our understanding of the emergence and significance of dementia as a major health issue.
A short article from the Section of the History of Medicine written by Douglas Firth. It features an extract from the papers of Sir Augustus d'Este, a grandson of George III, who gives an account of his lived experience with multiple sclerosis. It is one of the best-known and earliest descriptions of MS written by someone with the condition.
This paper seeks to summarise personal testimony of those suffering with MS before it was so termed, to give the flavour of their symptoms, disabilities and the way they were regarded by doctors and the people at large. J.M.S. Pearce; Historical Descriptions of Multiple Sclerosis. Eur Neurol 1 September 2005; 54 (1): 49–53.
A brief paper on the development of the naming of MS across national contexts.
Talley, C. (2004). The History of the (Re)naming of Multiple Sclerosis. Journal of the History of the Neurosciences, 13(4), 351
As MS is prevalent in areas of Scandinavian descent, and a ‘Viking gene’ hypothesis has been suggested this article searches Norse sagas for descriptions of clinical pictures which could have been MS and discuses The saga of Bishop Thorlak which describes a woman named Halldora, who suffered from transient paresis between 1193 and 1198.
Trygve Holmøy; A Norse Contribution to the History of Neurological Diseases. Eur Neurol 1 February 2006; 55 (1): 57–58.
A History of Multiple Sclerosis by Colin L. TalleyWhile we now recognize that MS is a common neurological disease, as late as the early twentieth century it was considered a relatively rare condition in Europe and the United States. It was only in the late 1860s that MS came to be generally recognized as a distinct disease apart from other paraplegic maladies. One of the important historical questions about MS is whether it was a new disease of the nineteenth century or one that had simply gone unrecognized for a long time. Answering this question is complicated by the different frames or ways physicians understood and explained disease in previous centuries. The way we now conceive, categorize, and explain disease is a relatively recent formulation in the long view of medical history. This work aims to answer some of the fundamental questions of the history of MS. How and why did MS emerge when and where it did, first in a book of pathological anatomy in early nineteenth-century France, then as a distinct disease category in France by 1868? How and why did the perception of MS as a rare disease in the early twentieth century change so that by the middle of that century it was considered a common affliction of the nervous system? How did local conditions shape research on MS? Why did MS emerge as a popular crusade and research priority, rather suddenly, in the late 1940s and early 1950s? How has the experience of people with MS changed from the nineteenth to the twentieth centuries? Since there was no consensus about the merits of any treatment until very recently, how does one explain the sometimes aggressive treatment of disease from the late nineteenth century to the mid-twentieth century? This book focuses in part on how sociocultural factors allowed MS to emerge into medical awareness and later popular consciousness and how the different scientific and sociocultural frames of disease affected the experience of people with MS. These factors were important in particular ways because of the peculiar disease process of MS, especially its tendency to wax and wane in many patients and in clinical symptoms.
The Journal of a Disappointed Man by W. N. P. BarbellionOne of the great diaries, which caused a sensation when first published in 1919. It begins telling of childhood larks but becomes more serious for its deeply moving account of Barbellion's struggle with MS. A deeply moving account.